Sue it sounds awful what you're going through, you will get a yearly mammogram or should for 5 years as thats what mum was told. I wont know what they will offer me until july time after Radiotherapy.

You would think they would do more in our 1st year as we are all worried its going to rear its ugly head again.

Sending you a big hug x

hey ladies,

Sorry didn't mean to be quiet either, have been thinking about you all.  I think we are all going through a tough time in our journey.  We'll get there.

when i met the consultant last week he said a lumpactomy would be fine but will double check with oncology.  Then had a call from the nurse to say i need to have a mastectomy now, boo.  Apparently the initial area of cancer was over 185mm :(  My last scan was January, so I've asked for another scan before they operate.  I'm seeing the consultant again on Tuesday to reconfirm the procedure and hopefully a date.  Its all very scary with this virus.

I'm sorry to hear you are struggling Sue. Are you going to have the tablets?  I wonder if i'll be offered them as my tumours haven't totally shrunk, well that i know off.  So check up once a year is standard procedure on NHS?  Are you having radiotherapy?

Hi Linda, good luck for Friday :) I'm sure you are really worried but they will take extra precautions,thinkin of you.  I got a text message to remind me to wash my hands before my hospital appointment on tuesday and to wash them before leaving.  Hope you get the BRCA results soon.  How long has it been?  

Are you all ok now Claire after your infection?

Hugs all around xx

HI Mich

I had them done in Jan so 12 weeks is just after easter, do they call you or write to you with results?

I'm thinking i'll be positive as mum had it and depending if its 1 or 2 my ovaries may need to go too! This TN is the gift what never stops giving!!!

How do you feel about having a mastectomy? I thought about it and I think they can go if it gives me more chance of it never returning i just dont know if i would have implants or the DIEP flap, but I'll give it more thought if it comes to that.

Linda x

Hi Linda,

Ok not long now then.  I requested a call when i completed the form, so they called and sent me a letter to confirm my result.  If you dont hear back by Easter i would mention it to your oncologist.  Mine was delayed until i mentioned it to my oncologist and they chased for me.  Apparently i signed the consent form to store my dna on file and sent off the blood but didn't complete the form to say i wanted to go ahead.  Weird as intially i only got one form.  I have my fingers crossed for you, you'll hear soon so you can make some decisions on treatment etc.

Well after being told i can have a lumpactomy last week i got my head around and i thougtht ok i'll go with that choice.  But now oncology hav said it must be a mastectomy, i was initially dissapointed but realise its the best choice and decision is now out of my hands.  I'm not sure about reconstruction either, i'll prob find out more on tuesday.  I know it will be a delayed reconstruction as i need radiotherapy first and it cam damage the new breast.  The consultant did mention last week he doesn't recommend implants for risk of infection.  I'm not sure if i have to decide on what i what done at the time of opp.  So have a list of questions.

Hope you are managing ok with the side effects.  I have pain in my fingers now my chemo stopped 2 weeks ago, weird! Ive read its the peripheal neuropathy (spelling!)

Hugs xx

I think I signed a form to say I wanted to go ahead I had a copy and sent 1 back, i still have the ladies number i may give her a call tomorrow see if anything is just sat in their system.

My surgeon told me implants can cause problems with scar tissue rubbing on them, I will probably go with what he recommends, he did laugh  when i said oh well there is a silver lining, i'll have new boobs and a tummy tuck at the same time lol

My last Doxe was a lot better on the 90%, i have neuropathy in my fingertips and toes which i will mention tomorrow, I dunno if you felt like this but I am amazed with myself that I have managed 5 chemos and survived.

Linda xx

Hi Ladies,

Sorry I left the conversation early last night, I was so tired, I fell asleep.

Mich, I'm sorry you need a masectomy but at least you will have peace of mind. This whole journey has been some rollercoaster!!! I was initially told I needed oral chemo but I was called in last Tuesday to be told I didn't. I am waiting for a date for radiotheraphy, it will be 7 weeks on Wednesday since my op so I am getting worried about the safe time limits.

Claire, will it take another 6 - 8 weeks for your scar to heal or 6 - 8 weeks from your op? This all seems never ending. Linda was right when she said it's the gift that keeps on giving. We have all been through so much already.

Linda, hopefully your BRCA test will come back negative. It's a horrid time all the waiting for results. I thought I would feel better after my op but I don't. I hope I don't feel this dread for the rest of my life, it's not a nice feeling being scared all the time. I'm not usually a woose but this is unprecedented.

Loads to love to you all,

Sue xx

Sue, I'm already 6 1/2 weeks since surgery, it'll take another 6-8 weeks for the wound to heal. I said to the surgeon I was worried about safe limits and she said there was absolutely nothing to worry about. The preferred limit between surgery and rt is purely about service levels and making the experience nicer for the patient, it has no bearing on the cancer at all. Surgery and chemo is the treatment, rt is just the back up and can be done at any time.

Hi Claire,

Thank you for clearing that up as I had my op 2 days before you. I phoned the RT department this morning and they haven't even got the referral form from the oncologist. I know these are difficult times but my stress levels are through the roof. Have they told you your risk of a recurrence? My risk is 20-30% which sounds high to me. Still, apparently, there is nothing I can do to reduce this. 

Fingers crossed you heal quickly and have your RT done and dusted.

Love Sue xxx

Well I had a telephone appointment with my Oncologist this morning and she made the decision not to give me my last Doxe on friday as i have neuropathy in my finger tips and toes. She said to have the last 1 would make this worse and could leave me with it for months and as i had a good response to Chemo she was happy for me not to have it so she is contacting my surgeon and said i may have surgery earlier than the 22nd april. Tbh I am kinda glad i'm not having it Friday with the virus running havoc, i was worried about my neuts being low again. So now i have to sit and wait i just want the surgery now before the NHS are properly weighed down with coronavirus patients.

Hope you're feeling a tad brighter today Sue, and the rest of you ladies are ok 

Linda x